Using the internet to seek information about genetic and rare diseases: a case study comparing data from 2006 and 2011.
Using the internet to seek information about genetic and rare diseases: a case study comparing data from 2006 and 2011.
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DOI：
10.2196/resprot.2916
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发表时间：
2014-02-24
影响因子：
1.7
通讯作者：
Kaphingst KA
中科院分区：
文献类型：
--
作者：
Morgan T;Schmidt J;Haakonsen C;Lewis J;Della Rocca M;Morrison S;Biesecker B;Kaphingst KA
遗传和罕见疾病信息中心 (GARD) 是遗传和罕见疾病网络信息的主要提供者。人们对个人寻求有关遗传和罕见疾病的网络信息类型或他们寻求的原因知之甚少。本文的目的是通过检查 2006 年和 2011 年的询问来描述有关遗传和罕见疾病的基于网络的信息类型以及从 GARD 寻求信息的原因。非专业人士（即患者、父母和亲戚）向 GARD 提出了 278 份英语电子邮件和基于网络的询问，这些询问是从 2006 年（n = 68）和 2011 年（n = 210）的询问中随机选择的，并使用内容进行检查分析。这两年中，人们最常寻求的是基本疾病信息（51/68, 75.0% 和 132/210, 62.8%；P=.067）和治疗信息（17/51, 33.3% 和 62/132, 47.0%；P=.095）。具体而言，询问者询问有关其疾病预后的信息（6/51, 11.8% 和 23/132, 17.4%；P=.347），并请求专家（8/68, 11.8% 和 31/210, 14.8%；P=.536）。 2006 年和 2011 年，大量询问者要求提供与未诊断症状相关的信息，分别占询问量的 16.2% (11/68) 和 11.9% (25/210；P=.362)。与 2006 年相比，2011 年询问者更有可能在联系 GARD 之前见过医疗保健提供者（99/210, 47.1% vs 20/68, 29.4%；P=.010）并询问临床研究（24/210, 11.4% vs 2/68, 2.9%；P=.037）。在 2011 年的数据集中，大多数询问者是女性（201/210，95.7%）。在我们 2006 年的样本中，男性是询问的主要来源（54/68，79.4%）。这项研究的结果表明，外行人联系遗传和罕见疾病信息中心最常寻求有关疾病预后的信息、寻找专家并获得症状诊断。在互联网上搜索遗传和罕见疾病信息的个人的独特特征包括对参与临床研究的兴趣日益浓厚，以及希望补充或更好地理解在与医疗保健提供者就诊期间讨论的信息。这些努力代表了患者自我倡导的进步。
The Genetic and Rare Disease Information Center (GARD) is a major provider of Web-based information on genetic and rare diseases. Little is known about the type of Web-based information individuals seek about genetic and rare diseases or their reasons for seeking. The objective of this paper is to describe the types of Web-based information sought about genetic and rare diseases and the reasons for seeking it from GARD by examining inquiries from 2006 and 2011. There were 278 English-language email and Web-based inquiries posed to GARD by lay individuals (ie, patients, parents, and relatives), which were randomly selected from inquiries in 2006 (n=68) and 2011 (n=210) and examined using content analysis. Most often in both years, individuals sought basic disease information (51/68, 75.0% and 132/210, 62.8%; P=.067) and information about treatment (17/51, 33.3% and 62/132, 47.0%; P=.095). Specifically, inquirers requested information about their disease prognosis (6/51, 11.8% and 23/132, 17.4%; P=.347) and made requests for specialists (8/68, 11.8% and 31/210, 14.8%; P=.536). In both 2006 and 2011, a substantial subset of inquirers requested information related to undiagnosed symptoms, representing 16.2% (11/68) and 11.9% (25/210; P=.362) of inquiries, respectively. Inquirers were significantly more likely to have seen a health care provider before contacting GARD (99/210, 47.1% vs 20/68, 29.4%; P=.010) and to ask about clinical research studies in 2011 than in 2006 (24/210, 11.4% vs 2/68, 2.9%; P=.037). In the 2011 data set, the majority of the inquirers were women (201/210, 95.7%). In our 2006 sample, men were the majority source of inquiries (54/68, 79.4%). Findings from this study indicate that lay people contacting a genetic and rare disease information center most often seek information about disease prognosis, finding a specialist, and obtaining a diagnosis for symptoms. Unique characteristics of individuals searching the Internet for genetic and rare diseases information, includes a growing interest in participating in clinical research studies and a desire to supplement or better understand information discussed during a visit with a health care provider. These efforts represent advancements in patient self-advocacy.